UC Has Taken Over My Life and I Don’t Know What To Do?

Amanda, diagnosed August 2011 with ulcerative proctitis, 20 year old Molecular Biology/Women’s & Gender Studies undergrad living in the SF bay area. I’m currently navigating school, working in a lab, activism, and SCD, while still attempting to have a social life.

Symptoms:

bloody Diarrhea, 3-6 times a day
abdominal cramps
gas
headaches and constant thirst (I think these are side effects of the Canasa)

I don’t know what to do. I’m 20 years old and I feel like being sick has taken over my life.

Let me back up.

This past spring/summer I started noticing a little blood. I din’t think much about it until it got worse to the point that the amount of blood started to freak me out. I didn’t really have any other symptoms except feeling exhausted by 3pm everyday after getting a solid 8-9 hours of sleep.

Fast forward to end of July/August and I’m getting a colonoscopy. And the nurses say “oh wow, you’re our youngest patient!” thanks. I was already aware that this was not normal for someone my age and I was freaking out about not knowing what was going on with my body.

And then came the diagnosis and a new doctor, this time a GI. He said it was ulcerative proctitis, which is uc but just constrained to the last part of the colon/rectum. Also, apparently my great-grandmother had ulcerative colitis. My Dr. said my prognosis was good and I might never have a problem again. He put me on Apriso and enemas. And after the drama of getting enough meds to take with me, I left for 4 months of studying abroad in Beijing, China. The meds worked and everything seemed great!

China was an incredible adventure. It was even more of an adventure in late October going to the hospital in Beijing after I went into a bad flare/traveler’s D, after midterms and a week in southern China, and needed IV fluids and medications. They gave me mesalamine suppositories and I was still on the apriso. Thankfully the flare went away and I was not the only one in my program with the big D! just the only one losing blood…but having ulcerative colitis on my study abroad definitely affected my stay there. When I’m in flare I get tired really really easily and not having energy to go out and experience things sucks. I ended up doing a lot less traveling outside of Beijing because I was worried about my UC flaring or being away from my program staff in Beijing who could help me navigate the hospital if I needed to go. But, at that point I was confident that this whole uc thing was temporary and I would be in remission for the long run.

Fast forward to the present: I’ve been back in the US now for 3 months, and they’ve been a roller coaster.

I’ve been in mini-flare off and on since coming back, and for the past 3 weeks I’ve been in full symptom flare. 2.5 months ago I started the SCD diet and I think that it’s helping, but not working the way I hoped it would. This flare I’m not as exhausted as I used to be and I think that’s because of the SCD. However, I’m back on the Canasa mesalamine suppositories for the last week, and the past few days I haven’t seen any blood! My other symptoms have only slightly lessened.

However, since I started back on the Canasa I’ve been having headaches every day that won’t go away with tylenol and water. I muddled my way through a final presentation this week with a headache and I forgot to say about half of my points. Plus, I feel constantly thirsty/dehydrated. As soon as I drink something I’m thirsty again 5 minutes later. I think I’m drinking about 12-16 glasses of water/watered-down juice a day and it’s going through my system annoyingly fast. I have final exams this week and I’m trying to study despite the headaches and needing to pee every hour, but I don’t know what I’m going to do once I actually have to sit for 3 hours straight. I know I should talk to each professor before hand but how embarrassing!

I know I should call my GI, and I’m planning to in the morning when his office opens, but what’s he going to say? Here, I’ll switch you to another expensive drug that your insurance doesn’t cover that has potentially worse side effects? I love this site and hearing other people’s stories but they make me worry about what is in store for me as my uc keeps getting worse. I don’t want to have to go on drugs that are more hardcore than mesalamine, but what if I have to keep trying all of these drugs and nothing works and all I get are bad side effects? I feel like this is taking over my life and I don’t know what to do about it. While all of my friends are getting drunk at parties and living normal lives, I stay in because I’m afraid of what the alcohol will do to my already unhappy colon and I am worried about not knowing if they’ll be a bathroom at whatever party they’re going to.

All of my friends and family have been really supportive but I feel like most of my friends don’t know how to deal with the new me.

UC has changed me. I used to be young, extroverted, and fun. Now I’m a 20 year old living like a grandma. I stay at home and cook and do homework because I’m too afraid of my uc embarrassing me. The only friendships I maintained are the ones close enough to still come hang out with me, even though I’m not the same as I was before. It get’s old when I have to cancel plans again and again if I’m not feeling well enough to venture out. Thankfully, I have a good friend who has been battling cystic fibrosis for his entire life so he really gets it. But besides him, I feel completely alone in this. I’m just scared that this new reality is here to stay and I’m powerless to change it.

10 Responses to UC Has Taken Over My Life and I Don’t Know What To Do?

Are you sure it is not the Apriso causing the headaches? I can’t take Apriso, it has an ingredient in it that really bothers me, same as an artificial sweetener, forget what now, but google it & you’ll see what I am talking about. Canasa never gave me any kind of headache issue and I am highly prone to migraines.

Amanda,
you’re not alone. Actually, most UC people get diagnosed between the ages of 15 and 30. I was 30 when I first started having symptoms. Keep going back to the doctor until you’re satisfied with your treatment. It can be better. Good luck.

I have been there before. The nice thing is you can go to your school and ask for help. My school has an office called “Accessibility Services.” When I was first diagnosed with UC in August 2009, I tried just doing everything on my own, didn’t tell my professors, group members, even my close friends what was going on. I eventually had to drop out of all my classes because the flare was so bad. Winter 2010, I started taking classes again, but still did not let people know of my condition. I was able to complete my classes, but not as well as I had hope. Fall 2010, I went to the Accessibility Services office and told them about my situation. They notified all my professors about my situation. I was able to be excused from class on days I was not feeling good and they even had students who worked at the office go to the class and take notes. Also, on exam days if I was not comfortable taking the exam in class, I could go take it at the office where I could take bathroom breaks, if needed, and had more time to finish the exam, not that I ever needed the extra time.

Have you ever been on Prednisone? I was on it for about a month in a half, but it was the only medication that was going to get me out of the severe flare in Fall 2009. It is a very strong drug with very bad side effects, but since I was only on it for a short amount of time, the side effects where not that bad.

Amanda,
I was 18 when I was diagnosed. Prednisone got me through the flare and into remission.
I also had to not eat certain foods(raw fruits or veggies, peanuts, popcorn, spicy food, etc.), but everyone is different. I agree witht eh others, tell your doctor, thereare many different drugs they can switch you to. For dry mouth, my dentist told me about Biotene. It comes in a mouthwash, toothpaste, mouthspray, and maybe other stuff too. It really helps!
I too have always felt that I missed out on my life, but we have to deal with what we have. On the days you feel good, go out and have a good time. I think I know of every public restroom in our area,LOL. There are drugs for different symptoms, so tell your dr. And yes, I agree, it is an embarrassing thing to discuss, but hey I wish back in 1982, when I was diagnosed, that I had a computer and all of these online support groups! I am now 48 and I do enjoy reading the posts, so many ideas and it’s a great feeling to know that you are not all alone in this:) Take care and good luck. add me as a friend if you’d like.

I too, started out with proctitis, 13 years ago, and I now, apparently, have pancolitis, which means total colon involvement.

I know that headaches are most likely caused by the medical drugs we are prescribed for our disease, and/or anemia, which we tend to get since we often lose blood. Your tiredmess, much the same. Drugs, and/or anemia.

Boy, do I ever hear you about feeling like an old person, staying home, and missing out on life. So often, socializing involves food, or alcohol, or both. It’s the pits when you eat while you are out, and then you get cramping and pain, and maybe have to run to the stupid bathroom. Not to mention what alcohol can do to us with this disease. I think we’re all the same when it comes to going out and trying to have fun, and just enjoy life, like everybody else. Those ‘normal’ people. Whenever I’ve had a flare, I often feel like I’m not a part of ‘life’ and that it seems to be going on without me! Man, I hate that…

Anyway, just last week, I took myself off of my meds…that’s right…I was scared because we are told never to go off the so called remission drugs. I have been on asacol for 13 years non stop. I had been tired, some of my hair has fallen out, I was still cramping terribly, bleeding, and had that urgency we all know so well. It seemed to be doing nothing for me anynore, really. Just making me feel like crap…anyway, I started taking some probiotics for the heck of it, (acidopholous, to be exact), that were in the fridge because my husband takes them. Within two days, my cramping was gone, then I kept taking six of them per day (2 before each meal), and one month later all of my symptoms were gone. So anyway (!), I decided to taper off my 12 asacol(mesalamine) pills by two every week, but things were so good, I ended up off them within 2 days. I hate, or maybe I don’t hate, to say this, but I feel totally normal now! Like a person without colitis. I am so afraid…it’s like I am waiting for the shoe to drop and for it to all come back…I don’t know why this has happened. Was my flare just over? That has never happened before. I always had to TAKE drugs to get rid of a flare…not stop them!

I am not advocating anyone to stop their medication. At least not yet…I’ll happily be the guinea pig! I plan on keeping everybody posted. I mean, how could it be this easy? Probiotics? If it is this easy, then why doesn’t it work for everbody? Or would it, if we all just kept taking the probiotics? Or, maybe there are different types of UC? Maybe, some of us get it because of antibiotic use, while others are may be predisposed (familial). I’m not sure that anyone, including the medical profession, knows.

I am not well like by my doctor, because I have refused the steroids (prednisone), the remicade, and the Imuran (an immune suppressor) that she wanted me to try. NO WAY. I am considered a difficult patient, because I question everything, and think for myself. My body does not like drugs. I know this. They always make me feel crappy, and they hurt my body. I, seriously, would rather lose my colon than try any more drugs. The asacol was bad enough…

Dear Amanda,
I was 20 and a second year medical student when I was colonoscopied and diagnosed as a UC patient. Now 2 years has passed since the time I was diagnosed. It was complicated at first, because I had a lot to study, I was missing exams, and as you say I wasn’t the same person anymore. All I thought about was that why should it happen to me at this time of my life. But as time passed, I got used to this life, I tried to delete all the stressfull situations and just focus on how I can still have a beautiful life with this new situation. I still go out with friends but when they order things that might not be good for me, I order a natural orange juice instead. And by the way, we’re not the youngest patients, one of my profs mentioned a 7 year old boy with UC.
Anyways, It’s not the end of the world love, everyone has a problem in life. I’m sure you can manage it. Just take it easy and try to have loads of fun beside studying.
take care loads sweetheart,
Samaneh

All of the stories above contain elements of my own story and yours. I was diagnosed at 18. I spent the last half of my senior year of high school in bed with a major flare. During that time none of my supposed friends ever came to see me even once. If I didn’t have my family I would have been even more lonely. I’m now a senior in college and have been doing better so I know there is hope for you.

It must be hard to talk to your professors about something so personal. I want to know what happens. Good luck! Hope you do well on your finals!

Hey Amanda, If you are interested, you can join a pretty cool local meetup group on meetup.com called the SF IBD meetup group, I’m actually a part of it myself along with quite a few other pretty interesting folks who have Crohns Diseaes or Colitis in the Bay Area. it might be a great way for you to meet others and see how others are coping with the symptoms and disease and also just to feel normal haning out/meeting up . just an idea, but I found it pretty cool (free) and simple.

I just happened to stumble across your website today, and this message may be posted so late that you never see it. Mostly, I just wanted to encourage you (and any other fighters) that you are not alone.

I’m 23, and I was diagnosed with UC when I was 21, getting my first degree from UT Austin. I was diagnosed with moderate to severe UC, experiencing symptoms on average close to 30 times/day. My roommate found me collapsed on the floor of my bedroom one weekend, ultimately resulting in a rushed trip to the ER, later followed by a visit with a GI specialist and an eventual diagnosis of UC.

I wanted to encourage you NOT to listen to ALL the advice people are giving you (e.g. eat this, don’t eat that, try not to stress so much, blah. blah. blah.). It is overwhelming. Do what is right for YOU, and that will mostly be learned by trial and error. Never take yourself off meds without speaking with your doctor (I did this in an attempt to switch to a homeopathic route after being SICK of the moodswings and non-stop eating accompanied by steriods. After four days in the hospital, I decided to not play doctor anymore).

It is HARD to constantly be happy and ready for whatever. We don’t make serotonin (the happy hormone) with failed colons. The best way to make yourself happy is simply mind over matter. You CAN own your disease. Bad times WILL come, symptoms will flare up and things may get bad…but try to see the good in the situation. For me, as a nursing student, I tried to see it as an opportunity to learn WHY my nurses chose pain-management as their specialty. I spoke with doctors, CNAs, even transporters of hospitals just to try to get to know people…and I learned that EVERYONE is battling SOMETHING.

What has helped me stay positive is knowing that UC has made me significantly more health conscious. I know when I crave salt or sugar it is because my ulcers are craving a cure, and I know not to give into my cravings that will ultimately lead to stronger symptoms. Instead, I hydrate ALL. THE. TIME. and I work out. Even on days like today, when I feel like I won’t have any energy…I make time to spend at least twenty minutes on a bike or walking outside.

As far as medication goes, what has helped me is Liyalda (a brand of mesalamine, in the same family as apriso) and Remicade IV treatments every six weeks. Remicade is tough, but it’s worth the fight.

Try your best to NOT be stressed. Even though your disease may not be caused by stress, cortisol levels in the body can be toxic to people like us. Find something to be passionate about (for me, it was nursing) and go after your goal. Speedbumps WILL happen, but I promise…if you let them, they will make you stronger. Choose to fight.